hello
I am new here. My daughter 13 was just diagnosed(yesterday) with pauciarticular arthritis of the Talar (ankle) in both ankles . she is series negative and has been at an ortho department so she has not been to a rhuematologist yet .. she has been having extreme ankle pain for 8 months and has had all kinds of tests so basically this was a diagnosis by elimination.
can any one tell me about this ? has any one had this or experience with it? any information at all is greatly appreciated
thank you
I don't have any experience, but i'm sorry you and your daughter have to deal with this pain. Best of luck to you and keep us posted.
Phats
Hey, welcome, I dont have any experience with being diagnosed by elimination. But i was dx with JRA at 8, started in my ankles as well but it was very quick for me-swollen painfull ankles high fever then boom jra. hope things get figured out. when is she going to go to the rheumatoligist? best of luck! im around if you have jra questions!Oh I'm sorry she has to deal with this at 13 - it's already hard enough to bee a teen, let alone to have a health issue!!!
I was DXed with JRA when I was just a baby, but my ankles were always my main problem, so I feel where you're coming from. I'm curious as to what medications she's on? I know that the biggest thing that was plugged to me was support, support, support. Braces, ace bandages, or high tops were always recommended to me. I'd suggest maybe starting her off with some simple ace bandages, and see if that helps her at all. You can always ask your doctor what they think.
Also, there's a lady on this board by the name GrammaSkittles - she has RA, and her 12 year old daughter was JUST DXed with it. She would be of GREAT support and loads of information. She also knows of a wonderful parents board, for the 'rents of kids with JRA. Look her up! And I'll be sure to let her know you're here!!
*hugs*
Hello and welcome. I'm so sorry you and your daughter have to deal with this but I'm glad you found us. I can't answer your questions but others here can and will be happy to do so. Please don't hesitate to ask any and every question that you think of.wow that was quick! thanks guys ..< =text/>_popupControl(); Hi True and welcome to the board. I am very sorry that you had to find us, but there is wonderful support here with very caring people.
I am the GrammaSkittles that Arriscolwell told you about. What I am going to do is send you a PM with some information in it for you. I belong to a board that is wonderfully supportive for parents with kids that have JRA.
If you have any questions at all...and always remember there is no such thing as a stupid question...please feel free too PM me at anytime!
Welcome to the boards, True!! I don't have any answers myself, but I'm so glad there are plenty of people here to help you out.thanks Grammaskittles I have signed up for the other board and am just waiting for confirmation.
I can not reply to your private message as I am at work and it blocks it .
fourtunately from what I read the DIagnosis of Pauciarticular is a less severe form of RA Pauci meaning 4 or less joints . At this point it is only in her ankles. Hopefuly I can find someone to chat with that has experience with the same thing. I am curious if she can really participate in sports and not damage her joints . Also I am reading about eye problems with Pauci and am wodering how Quickly I need to get her to the opthalmologist . as I mentioned before we have not seen the Rheumatologist yet and her Ortho did not mention this.
Any way thanks for the welcome and any advice or tricks to help her with the pain or any thing else would be great !
have a great day !
Hi True...welcome!Hello, True and welcome. I hope you find a lot of support here...we have a couple of mom's with kiddos here on the board.
From my understanding of Juvenile RA(JRA) is that they do show up as Sero(series) negative. Also, I was told that RA does start in the feet...I don't know statisticly if that is true, but that is what I was told. I do understand the process of elimanation diagnosis, because that is mostly how psoriatic arthritis is dx. I happened to have a large outbreak of psoriasis at the time of dx, so we were pretty sure about that. Don't worry about the process of elimination testing, because there is usually good that comes out of it. For me the good is that I know I have a genetic marker, so I will have to keep an eye on my kids.
This will be long and frustrating at times, but be patient and post as many questions as you need to.
Again Welcome!
*my* docs always had me do it like this: In a flare, eye exams were every 6 months - if something came up abnormal, every 3 months. If I was not in a flare, regular yearly eye exams. And of course, if she ends up taking a medication that has eye problems as a side effect, you would need to up her exams to every 6 months. But that's just what I was always told!thanks Katie
I am making her an eye appointment today, I figure it cant hurt .
what kind of RA were you diagnosed with? I have not found anyone that has been diagnosed with Pauciarticular. Its strange because allot of the stuff I read on the internet says that it is more common for really young girls before age 10 to be diagnosed .. and she is almost 14 so I am curious. Also I am hoping that if it has been in her ankles for 9 months then were safe that it will not travel to any other joints? or can that happen at anytime? were you allowed to play sports?
thanks!
I have JRA - Poly. I have it alllllllllll over. Heh. I was allowed to play sports or whatever I wanted. But there was always the understanding that if it hurt, STOP! I have to be honest, I wasn't too atheletic of a kid, but I did have my times with sports. Sadly for me, as I was sooo uncoordinated, it usually ended up in injury. LOL But that's just me, I swear. If she feels like she can do it, and you're not going in and getting x-rays that are showing regular, persistant damage, I would say play away! There's a lot of benefit in keeping your joints moving for RA patients.
As far as it not traveling to other joints.......I'm not really familiar with that. I wouldn't count on it, just for the fact that it seems the majority of people with RA, of all ages, have new joint involvement here and there. But that's not to say that someone can have *just* 2 or whatever joints involved for all time. I wish I had a better answer for you, but it really can just be that unpredictable.
Try this link to jra informations:
http://www.nlm.nih.gov/medlineplus/juvenilerheumatoidarthrit is.html
Great link ! thank youtrueazuil7,
You just question away. This is the most informative senior forum you will ever find.
I've used so many over the counter alternatives and have yet to find one that actually works. I do tho have severe ra and so may be a differance. There are two that i would say may be worth a try.
One is Zyflamend from New Chapter. The reason that i would recomend this one is because it was developed at the University of Columbia, I think and actually went thru the phase trials that showed good improvements in a certain number of patients. I believe that most alternatives claim to work best for those not on the prescriptions, especially the heavy drugs.
The other that I would say to try is called Reparagen. This one claims quick response, i think with-in days as others usually require about a month of injestion. The reason that i will recomend this one is because it actually won the Reasearch Innovation Award from the US Institute of Health.
Keep in mind that a large percentage of jraer go into remission and never have problems again and another thing is that the cure is in the making. It is no longer a crippling deforming disease and is quite easlily a very livable disease.
Zyflamend:
Reparagen:
http://www.pressinaflash.com/reparagen/reparagen.htm?server= vital
LEV
< =text/>_popupControl(); As far as creams and ointments....meh you can try what you want, that seems to be a pretty individual thing as to what works for who. I'd say it is worth a shot though, as lots of people on the board use them. Heat and Ice - I am TERRIBLE at remembering which one to do when...but I *THINK* after activity, if she's swollen you would do ice. But like, if she wakes up in the AM stiff and swollen and achey, you'd do heat. And then again, some people can only tolerate one or the other. If that's the case, stick to whichever one feels good to her. I never used any braces or supports during exercise, but again, that's a very individual thing. You might ask her doctor on that one, or someone in the line of physical therapy, etc etc.
Ask as MANY questions as you want!!!!!
I have found capscaicin cream to help with back pain, but it is not without drawbacks. You have to use it for a couple of days before you get real relief, because it works by depleting "substance P" which is a peptide involved in pain transmission. And until the substance P is depleted, it burns like hell!!!! I would often use a mixture of benzocaine, menthol (Ben-Gay, etc) and capscaicin for the first day or so, until the burning stopped. It is also exquisitely painful if you accidentally get it in your eyes, nose, mouth or hoo-hoo (or anyone else's, for that matter).
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Sure it could be helping! And if it is, YAY! I hope it continues this way for you guys :)hi all
well the medicine really seems to be helping her.
for the first time in about 8 months she can walk around like a normal kid .she went to the grocery store with me and
she even went to the turkey day high school football game today ..and stayed the entire game!!! so that is great .
I do think the medicine is making her a bit tired though but maybe the arthritis does that? also she has had a few headaches after taking it but then it goes away.
anyway .. keeping our fingers crossed .. having a hard time not jumping up and down for joy as I'm still a little nervous
hope you all had a wonderful thanksgiving !
YAY!!!!!!!!!
I'm so glad to hear that! Sure, the JRA itself might be making her a bit tired, and so could the medicine. I'd say at this point it's a small price to pay. Just make sure she has the opportunities to rest that she needs, and that she gets plenty of sleep. All in all though, she'll crash when she needs to, it really won't take much of your coaxing to get her to sleep. Hehe Headaches are a common side effect of LOTS of the meds we take. As long as it's not causing her major problems, I'd say double check with her doc to make sure she can take tyenol or excedrine and have her pop a couple and maybe she can avoid the headache alltogether.
I hope this trend stays for her! Good luck!